How to Exploit Breast Cancer, One Blogger at a Time

Flying Monkeys

I got an email last evening from a woman who said she was from one of the more venerable online news sources, one that used to be in print. She said she was a senior editor who was “working on a piece about what you shouldn’t say to a breast cancer patient, and I was hoping you could lend your insight. If you’re open to it, could you send me your thoughts on what people shouldn’t say (and why), and some examples of what they could say that would be much better? Any anecdotes or advice would be terrific, and I would love to include your thoughts.” It immediately occurred to me that one of the things you shouldn’t say to a breast cancer patient was that you’d like her to tell you what you shouldn’t say to a breast cancer patient. I emailed her back, thanked her for asking me, but suggested to her that “this topic has been done to death. If you Google ‘what not to say to breast cancer patients,’ you’ll see what I mean.” I provided a link to a post by another blogger, who has metastatic breast cancer, who’s written what I think is pretty much the last word on the subject: Stupid things people say to those with cancer & their families.

I then went on to say, “With respect, I think there are a lot more apt and important angles on breast cancer that you could write about, especially for a media outlet as esteemed as _____. For instance, how many of the 1300 breast cancer charitable organizations are actually involved in some kind of fraudulent fundraising practices?” I then referred her to my last blog post. The use of the word ‘esteemed’ might have been laying it on a little thick, but I was trying to be polite while thinking she was alarmingly unimaginative for a ‘senior editor.’ I closed with a bit of nicey-nice and sent it off.

A short time later, she emailed back, saying, “I can assure you that the team has a very robust lineup of content planned — not just this piece.” I thought her tone was a little snippy, but I suppose mine was, too. She did close with “Thanks.”

Naturally, I went to check out this news site. It’s a clean site overall, fairly well laid out, as these things go, not overly crowded with crap, as are some I could name, and it didn’t take a hundred years to load, as do others I could mention. And I found her name on the masthead, although not listed as a ‘senior editor.’ But I didn’t find a single report anywhere about breast cancer, or even about Komen’s latest nonsense with pink drill bits. And worst of all, I couldn’t find a search box either, so I couldn’t check the archives for the past few weeks since the month-of-pink-overload began. What kind of self-respecting media site doesn’t have a search box? Whatever ‘robust’ content they have planned, they better hurry up with it before the damn month is over.

Lions and tigers and bears! Oh, my!

I was never one of the really popular kids at school. But I always had a loyal band of misfit friends who stuck together. What we had going for us is that we were always nice to other misfits, and we knew how to laugh, and we mostly recognized bullshit when we smelled it.

Not so different from how my life as a blogger is now, really. Of course, I’m very grateful that people bother to read and enjoy my blog at all. Wouldn’t be half as much fun to write if they didn’t. But when you’ve been bullied from a young age by the ‘popular’ kids, and you’ve survived with your psyche more or less intact, you tend to grow up to be the sort of adult who doesn’t give a big, fat rodent’s derriere whether you’re popular or not. And you still tend to smell bullshit a mile away, or, at the very least, employ a certain healthy skepticism. I’ve come to view these qualities as advantageous in the social media world, as helping me preserve a little objectivity when I’m exploring certain subjects on this blog. I like to think I can trust myself not to get exploited by someone for their own self-serving purposes. But maybe I’m just paranoid. My mother had a personality disorder that caused her to see conspiracies everywhere, so you never know. Perhaps I’m not so much skeptical as delusional. I’ve been accused of worse.

But I can tell you, without delusion, that in the past month, I’ve received every manner of request to get me to lend my name, blog space, time, ideas, and tacit or explicit endorsement to all sorts of exploits. And these are just the few that have escaped my vigorous spam filter. Some of them are fairly harmless. Some are legit. But a lot of them amount to sales pitches, delivered under the guise of ‘supporting breast cancer awareness.’ I know for a certainty that I’m not the only one who’s received these requests. I know that many, if not most, of these people making these requests just do some kind of Google search for ‘breast cancer blogs’ and go to town. Hence, they do not make me feel special. Or popular.

I’ve received several requests to review as-yet-unpublished book manuscripts. These are generally sent by other members of the cancer club who have written a memoir or a novelized memoir. These requests are a little heart-breaking. All of these authors mention how they wouldn’t have gotten through their ordeals without the laughter and support of their friends, bolstered by cake, retail therapy, or trips to the local day-spa, which, it must be said, was basically my strategy. One would presume they asked their friends to read their stories first. But after that, why not then find one of the several professional editors out there who make a living reviewing manuscripts? Why ask me? Sure, I used to be a professional editor, almost thirty years ago, but there are only fourteen people in the world who know that.

Likewise, I’ve also gotten a few requests to review and endorse songs, written to encourage us during Pinktober. I can always use a little encouragement, musical and otherwise. But generally, I turn to music that has nothing to do with cancer when I’m feeling disgruntled. Somehow I doubt these folks sending me iTune links know that I tried to be a rock star in my youth, or that I’ve written and recorded a number of songs that parody the experience of enduring cancer treatment and the barrage of pinkwashing that’s gone with it. Frankly, I’d rather watch a Weird Al video than listen to yet another person telling me what a hero I am. Bleck.

Then there are the requests to exchange links and/or to post something about some splendid product that is sure to make my life as a cancer patient much more tolerable. These include cookbooks, Japanese dietary supplements, and special services for breast cancer patients like retreats to find one’s ‘inner warrior.’ One of the more entertaining of these was for a wrist band (pink, naturally) infused with peppermint to be worn over a certain pressure point on the wrist, which is supposed to help control nausea. One may order these wristbands at a discount by visiting their website and entering the code ‘SAVBOOBS.’

Pay no attention to the man behind the curtain.

Among the more insidious offers are invitations to visit sites that are presented as supportive, informational online venues designed to help patients figure out if they are being adequately tested after initial diagnosis. They have names like KnowYOURBreastCancer.com and MyBreastCancerTreatment.org. Far be it from me, a staunch advocate of informed consent, to eschew gathering as much information as possible when one has been told one’s biopsy is positive. The two sites mentioned describe the benefits of molecular diagnostic testing, specifically the Oncotype DX test, which can be used to help determine whether chemotherapy would be beneficial, and to calculate a recurrence risk for those with early-stage breast cancers, including the risk for invasive recurrence with DCIS. Not a thing wrong with that.

There are a few things about these sites that I do take issue with, however. One is the fine print. Unless you look for it, you’d easily miss the fact that each of these sites is maintained by companies who manufacture such tests, Agendia in the former case, Genomic Health in the latter. They are not the only companies who make molecular diagnostic tests for breast cancer, but these two want you to ask your doctor to request their tests. To my mind, this occupies the same continuum of advertising as those ubiquitous drug commercials on TV that encourage you to tell your doctor to prescribe a specific medication for heartburn, say, or arthritis. To that end, additionally, both Agendia and Genomic Health have Facebook communities. Agendia’s is called Symphony Sisterhood for Breast Cancer, the ‘Symphony’ being a panel of four tests that analyze breast tumors. Genomic’s Facebook community is called Until Every Woman Knows. Both Facebook pages invite individual women to share their stories. I received an email invitation last week from a PR firm to allow myself to be featured on one of these Facebook pages as a way “to honor people who are using social media to raise awareness about breast cancer.” Several dogged minutes’ worth of investigation brought me to the corporation behind the invite. But I didn’t find it on their Facebook page. In the ‘About’ section of both of these community pages, the corporate names behind them are not mentioned.

Somewhere over the rainbow.

Regular readers of this blog know what a snarky bitch I am. Appropriately enough, the last time I used The Wizard of Oz metaphorically was in another post about the risks of exploitation by social media. But, however much I may let the fur fly here, I do try not to be unnecessarily rude to individuals. I politely declined the invite from the PR firm, saying that I did not normally allow any corporation to use my name or blog, because occasionally, I write reviews of research about such things as molecular diagnostics, and I would prefer to maintain my distance and objectivity. The response to this was an offer of links and videos describing the research their client had done about their products. There was some back-and-forth on this, but overall, it was a cordial exchange, devoid of snippiness.

We’re all grownups here in the blogosphere, and each of us has to decide for herself how to manage her social media presence. Me? I’m still the kid who was bullied as a child, who’s grown up to be a perennial skeptic. I like to think I’m occasionally performing a kind of public service, but maybe I really am just paranoid and deluded.

“…If I only had a brain
I’d unravel any riddle
For any individ’le
In trouble or in pain…”


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Attack of the Pinktober Sharks

It’s not even October yet.

About ten days ago, I got a call first thing in the morning on my house phone. The people I really want to hear from usually call me on my cellphone, and telemarketers are the folks who usually call the house phone. But occasionally, one of my doctors will call the house phone, and I was waiting on some test results (again), so I picked up the phone.

“Hello?” I said, and waited. I didn’t hear any background voices or any of those funny noises that herald an auto-dialer. So far, so good.

“Is this Ms. Kolb?” A female voice.

I never answer that question directly. If they ask, “Is this Mrs. Kolb, I usually say, “There’s no Mrs. Kolb here,” which is the literal truth, and hang up. What I said this time was, “Who’s calling, please?”

“My name is Hoozit Something-or-other. I’m a representative from Corporations for Character and I’m calling on behalf of the Breast Cancer Financial Assistance Fund. Many women with breast cancer suffer a significant financial impact and need help to pay their bills. Blah, blah, blah…”

I interrupted her. “I’m only going to say this once, so just listen, don’t say another word, and grab your pencil. I don’t know how you got my name or number, but I have some ideas. I’m one of those women with breast cancer who’ve suffered a significant financial impact. I’m going to give you an email address, so write this down. You are welcome to email me some information and links, and I will review and research them, and if I decide you are legitimate, I may write a blog post about your organization. And if I decide you are NOT legitimate, I’ll write about that…”

Foolishly, she interrupted me. She was not, I’m certain, waiting with her pencil poised to take down my email address.

“Oh! I’m so sorry! You are just the sort of person we’re trying to reach. Our organization…blah, blah, blah…”

“I told you not to say another word. Would you like my email address or not?”

“…and we’re trying to raise more funds and get the word out to the thousands of women in this country that…”

“You’re not listening, are you? Neither am I. Don’t ever call me again.” Slam. The great thing about still having a regular phone is that you can slam it when you hang up on someone.

Sharks and tornadoes.

I’ve researched the legitimacy of countless breast cancer organizations, including those who offer financial help. There’s no doubt that many of us go broke having cancer and could use some cash while we’re waiting for a cure. [See Broke: The Cost of Breast Cancer.] The last time I googled ‘breast cancer organizations,’ I got nine million hits. When I googled ‘breast cancer charity organizations list’ just now, I got three-and-a-half million hits. A lot of those hits were for groups that monitor such charities and who attempt to separate the good from the dross. Needless to say, it’s impossible for one blogger to keep up with the dross.

But after that ridiculous phone call, I did look up the Breast Cancer Financial Assistance Fund. Their website is in ‘maintenance mode.’ But I did find this: One of the Nation’s Worst Charities: Right Here!, a post published by the Utah Better Business Bureau just this year on April 22, 2014. And this, by Maggie Freleng, Breast Cancer Scams: The Worst Charities Include 5 Pink Types, posted a year ago. The bottom line is that the BCFAF is essentially a scam group that is part of another scam group called the Cancer Fund of America. From the BBB article:

BCFAF not only has been the subject of numerous legal actions by government entities, it was recently spotlighted in a detailed investigative report by the Tampa Bay Times and the Center for Investigative Reporting as the Second Worst Charity in the United States. Cancer Fund of America also known as BCFAF was also the subject of a 2009 news warning from BBB in St. Louis.[...]

BBB research shows that Cancer Fund of America, also known as, BCFAF hired Corporations for Character to solicit for donations via telephone. According to the 2012 IRS Form 990 for Cancer Fund of America, also known as BCFAF, Corporations for Character raised $448,276 and kept $410,996 with $37,280 (or a little over 8%) going to the charity.

Corporations for Character and Feature Films for Families are also the subject of a May 9, 2011, complaint in which the Federal Trade Commission and the Department of Justice allege the defendants made 16 million calls to numbers on the Do Not Call Registry and misrepresented how funds would be used.

Just to add insult to injury, I had also just received a snailmail solicitation from Bank of America for their Pink Ribbon BankAmericard MasterCard. Bank of America has earned its own list of reports about fraudulent practices, including this, by Mike Taibbi of Rolling Stone, about BOA’s role in the 2008 economic crisis: Bank of America: Too Crooked to Fail. However, never let it be said that corporate pinkwashing has gone out of style. According to BOA’s webpage, if you get their Pink Ribbon credit card, you can

Join the fight against breast cancer and earn cash back, too[...] For each new Susan G. Komen®-branded credit card account opened and activated, Komen receives a minimum of $3 and 0.20% of all net retail purchases made with the card. For example, 20 cents for every $100. Komen also receives $1 for each annual renewal of the card.

Wow, a whole two tenths of a percent! I mean, just think how many useless pink tchotchkes you could buy with $100! And with 20 cents going to Komen, that cure ought to be discovered any day now, eh?

People, the sharks are out there. And they’ve started early.
~


A few alternate suggestions. These folks will spend your donations legitimately:
Breast Cancer Action; see their Think Before You Pink page.
METAvivor, which funds research for metastatic breast cancer.

Oh, and apologies to the Sharknado folks for altering your poster. ;)


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I’m Too Young to Be This Age

This is sixty?

I’ve been sixty for about ten weeks now, and I still don’t know what I think of it. For the past ten years, I’ve been steadfastly tossing membership invitations from the AARP in the shredder. Wouldn’t be strictly accurate for me to join. The initials, after all, originally stood for the American Association of Retired Persons. And I’m not a retired person. Not yet.

Mine is the generation whose members are mostly unable to afford to retire as soon as we might wish to. We might live for 2, 3 or even 4 more decades yet, heaven help us. We occupy the Sandwich Generation. Some of us are still helping our kids pay off college loans while looking after elderly parents who can’t live alone any longer. We tend to be over-mortgaged and under-pensioned. Some of us try to retire and then have to return to work because we have trouble making ends meet, even with Social Security. It’s not pretty. But it’s not all dire either.

After all, a lot has changed since my mother was my age. She would never, for instance, have gotten a tattoo for her 55th birthday, or for any birthday in fact. I recall that menopause seemed to hit her a lot harder than it hit me. She hated the insomnia. When I had insomnia, I’d just get up and teach myself a few more tricks in Photoshop. When her back started bothering her, my mom took yoga classes. Me, I took tango and salsa lessons. I would take three one-hour classes in a row on Friday nights, Beginning Tango followed by Beginning & Intermediate Salsa. One night, a tall, rangy lad in Salsa II was sharing a new double twirl move he’d figured out in a Salsa club. I’d been getting twirled for two-and-a-half hours by then, but I practiced the double-twirl with him till I had it down. And then suddenly had to sit down and remain very, very still for several minutes so I wouldn’t hurl. It was a fantastic evening.

A few weeks ago, I noticed that my kneecaps have started making a funny, crunchy noise when I bend them. We physical therapists have a word for this noise. We call it crepitus. The word is as hideous as the sound it makes, but it’s not necessarily the end of the world. Not yet. I can still get up from a full squat, but sometimes it does hurt a little. With an air of wry tragedy, however, I called one of the local orthopods I know and left a message for his secretary to book me an appointment. Meanwhile, I’ve given myself a physical therapy regimen — strengthening and stretching exercises. I’d like to have an X-ray so I can see if there’s anything ugly going on in there so far. Just to have a little advanced warning, you know. Forewarned is forearmed and all that.

For years, one of my bellwethers has been Rene Russo. Rene and I were born in the same year, although she turned sixty about seven weeks before I did. I’ve always liked her attitude. She was 45 when she starred with Pierce Brosnan in ‘The Thomas Crown Affair.’ I found it encouraging at the time that another middle-aged white chick with longish, reddish-brown hair could still be such a hottie. This photo of her was apparently taken when she was 59. I notice that, like me, she’s added some blond highlights to her hair coloring. Helps hide the gray roots better. She’s got those neck lines like I have, and that extra half-chin when she smiles, and crow’s feet. Still, she looks wonderful. And normal. And human. Rumor has it that she’s had a little facial plastic surgery, but that hasn’t been confirmed. Judging by the absence of vertical lines between her eyebrows, it may be true that she’s had a little botox and some laser work. No matter, though. I have no doubt that the back of Rene Russo’s arms start to look like wadded up crepe paper if she goes without moisturizer for a day. Some things are just unavoidable. I’m not likely to resort to botox, but I bleach some of my sun spots. And if I slather on enough baby oil, that crepe paper thing goes away. You do what you can.

One interesting thing I’ve noticed is that I’ve suddenly decided that I have too much stuff. Well, except maybe books and music. And since they can, if one prefers, be had in e-form, and thus don’t need extra shelf space, technically, they don’t count as ‘stuff.’ No, I mean everything else. Clothes, picture frames, gewgaws, dishes, furniture. Even power tools. I just have too much stuff. I’ve spent much of this year unloading as much of it as I can. The Big Sisters are quite fond of me these days. My neighbors look forward to what I’m going to leave at the end of my driveway.

Speaking of clothes, I have begun to hear myself asking a truly ghastly question as I sort through my drawers and closets. That question is: ‘Am I too old to wear this now?’ Dear gawd. This is applied to everything from certain hemlines to tank tops to anything that is too clingy. The bikinis got tossed decades ago. But there’s a lot of stuff that’s hung around, waiting for me to decide if a certain item makes me look extremely fortunate or like a damned idiot. I’ve kept my tight jeans and my red high heels. I’m not so sure about that paisley, halter, mini-dress.

In the meantime, to get down to what truly matters, I’m very grateful to have known so many kind, lovely, funny, intelligent, creative people over the years. And I do want to thank those of you who’ve hung in there with me through any portion of the past sixty years, especially the last five or six since the you-know-what suckage. I very much appreciate those of you who still genuinely care about me, and who don’t get on my nerves, and who employ decent grammar, and who aren’t ill-informed gits who get their health advice from people like Dr. Oz. Oh, I kept all my lipstick, by the way. So, a big mwah from me. I’ll let you know when I get around to throwing the party.


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Komen & Kohl’s Klueless Kampaign

I’m sorry to have to report that my blog either got hacked or was attacked by gremlins, and this post — and all the comments readers kindly left — mysteriously disappeared from my database.

Once I’ve picked myself up off the floor from the shock, I will try to reconstruct it. This is just to serve as a spaceholder for the links back to the original post that others have generously posted elsewhere.

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